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3. Project SuGAR

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Background: Gullah-speaking African Americans have high rates of type 2 diabetes characterized by early onset and relatively high rates of complications (Sale et al., 2009). Researchers hoped to discover diabetes-specific alleles in this community because the Gullahs have a lower admixture of non-African genes in their genetic makeup than any other African American population in the United States due to their geographic isolation on the South Carolina coastline and islands. In addition to the scientific objective of identifying the genetics behind diabetes, Project SuGAR (Sea Island Genetic African American Family Registry) had an important second objective: to provide community outreach to promote health education and health screenings relative to metabolic and cardiovascular diseases.

Methods: The project used a CBPR approach. Investigators organized a local citizen advisory committee (CAC) to ensure that the research design was sensitive to the cultural and ethnic background of the community. This committee was involved in all phases of the research study.

Results: Services provided to the community included health education fairs, cultural fairs, a mobile “SuGAR Bus” to conduct health screenings, and jobs for community members who were staff on the project. Investigators exceeded their enrollment goal with 615 African American families, totaling 1,230 people, contributing to the genome study. The success of their recruitment strategy helped researchers cre­ate a world-class DNA registry that has been used to identify markers for diabetes, including novel type 2 diabetes loci for an African American population on chro­mosomes 14q and 7.

Comment: The success of the community engagement employed by Project SuGAR is further evidenced by the fact that the local CAC that started in 1996 is still operating today with the dual goals of establishing a family registry with DNA and developing long-term collaborations to promote preventative health. Under the new name Sea Islands Families Project, the local CAC oversees the use of the Project SuGAR registry and has branched out into similar community engagement projects such as Systemic Lupus Erythematosus in Gullah Health and South Carolina Center of Biomedical Research Excellence for Oral Health. The local CAC adheres to the principles of CBPR and advocates community input at the initial development of the research plan. To this end, investigators who are new to the Gullah community and interested in community-based genetic research are asked to present their research plan to the council members before initiation of research projects. Investigators are also asked to present their findings as well as any publications to the group.

Applications of Principles of Community Engagement: Project SuGAR exemplifies Principles 1–6, which ask researchers to be clear about the purposes or goals of the engagement effort, learn about the community, and establish long-term goals based on community self-determination. Consistent with these principles, this partnership used a local CAC to ensure that the goals of the researchers were consistent with the goals of the community. The ongoing nature of the MUSC-Gullah collaboration illustrates Principle 9.